tag:blogger.com,1999:blog-55051873010236344682018-02-14T08:59:09.998+00:00The Sound of the SilentThe journal of a mother raising a very disabled childThe Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.comBlogger389125tag:blogger.com,1999:blog-5505187301023634468.post-27971867695909689952018-02-07T14:54:00.000+00:002018-02-07T14:54:01.363+00:00Some help please: How do I best fight neurological fevers?<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-lagzomKQMBE/WnsR3LmY0HI/AAAAAAAABzY/hFyU6VtAtWkMYF1yJpSJAM5q6qoWQYFkACLcBGAs/s1600/2018_02_07%2BBest%2Bpersonal%2Bcooling%2Bdevices.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="171" data-original-width="647" height="168" src="https://4.bp.blogspot.com/-lagzomKQMBE/WnsR3LmY0HI/AAAAAAAABzY/hFyU6VtAtWkMYF1yJpSJAM5q6qoWQYFkACLcBGAs/s640/2018_02_07%2BBest%2Bpersonal%2Bcooling%2Bdevices.png" width="640" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">From "Best personal cooling devices" <b><a href="https://gadgets-reviews.com/review/13-top-10-gadgets-to-keep-you-cool-this-summer.html">here</a></b></td></tr></tbody></table>This is a plea to anybody who has grappled with central/neurological fevers in an epileptic. I'd love to hear how you tackled them.<br /><br />C. has had them periodically for about a decade.. But in the past week they have become significantly more perturbing. They occur at least once a day and don't respond to the 400 mg.of Advil which previously zapped the fever and the concomitant seizures within minutes.<br /><br />I've spent one to one and a half hours sponging her down with wet cloths before the seizures abate. <br /><br />Googling didn't contribute much. First it alarmed me with <b><a href="http://www.medlink.com/article/fever_neurologic_causes_and_complications">this line</a></b>:<br /><blockquote class="tr_bq">"[Central] Fever is also associated with poor prognosis in patients with stroke and brain injury"</blockquote>I did learn that such fevers are generally unresponsive to antipyretics so Advil's inefficacy is standard. And also that "surface or intravascular cooling devices" are recommended. I had never heard of such devices so I found this:&nbsp;"<i>Comparison of Two Surface Cooling Devices for Temperature Management in a Neurocritical Care Unit</i>", <span role="menubar"><a href="https://www.ncbi.nlm.nih.gov/pubmed/27960070#" role="menuitem" title="Therapeutic hypothermia and temperature management.">[Ther Hypothermia Temp Manag.</a></span> 2017] <br /><br /><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-N_An7kTUz0M/WnsS17tSe3I/AAAAAAAABzg/zcZo6nJ0l9MXRxzamNZIfasyOoNndaYGACLcBGAs/s1600/2018_02-07%2BIn%2Bthe%2Bgrip%2Bof%2Bfever.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="631" data-original-width="1468" height="171" src="https://4.bp.blogspot.com/-N_An7kTUz0M/WnsS17tSe3I/AAAAAAAABzg/zcZo6nJ0l9MXRxzamNZIfasyOoNndaYGACLcBGAs/s400/2018_02-07%2BIn%2Bthe%2Bgrip%2Bof%2Bfever.png" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">C. in the grip of a central fever a few nights ago</td></tr></tbody></table>So I'm now off to the pharmacy to search for one. <br /><br />As for for input from C.'s doctors: when she was hospitalized 2 months ago, we mentioned her fevers repeatedly to the treating team. They were all utterly uninterested in the symptom. In fact one of them averred that the seizures were probably triggering the fever rather than vice versa.<br /><br />Of course, I know that's not the case. C. does seize at times without any fever. And, once her fever is lowered, she stops seizing. So it's really a no-brainer. The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com3tag:blogger.com,1999:blog-5505187301023634468.post-29945180006197397732018-02-03T21:16:00.004+00:002018-02-03T21:17:53.462+00:00The hunt for CBDAI used to believe that this country is a medicinal cannabis paradise. We've got an abundance of doctors willing to apply on your behalf for a license (and that's a pre-requisite). Provided your ailment is one of the many that the government's health officials recognize as treatable with cannabis your license will arrive within a month. We've got nine suppliers to choose from.<br /><br />But this week disillusionment struck. After a concerted search for CBDA, we have concluded that it is definitely not sold in this country. Every one of the suppliers I contacted told me that either they'd never heard of it or had but didn't sell it. <br /><br />What is it? <br /><blockquote class="tr_bq">Cannabidiolic acid (CBDA) is a chemical compound found in the resin glands (<a href="http://herb.co/2015/11/20/best-video-explaination-cannabis-trichomes/">trichomes</a>) of<a href="http://herb.co/2017/04/05/eating-raw-cannabis/"> raw cannabis</a> plants. In this case, raw means unheated and uncured. Basically, raw cannabis is fresh flower and leaves trimmed directly from the plant. CBDA is the acidic precursor to the more widely known molecule <a href="http://herb.co/2016/07/26/everything-you-need-to-know-about-cbd/">cannabidiol (CBD)</a>.] <a href="https://www.cibdol.com/blog/368-cbd-science-the-difference-between-cbd-and-cbda"><b>Source</b>: https://www.cibdol.com/blog/368-cbd-science-the-difference-between-cbd-and-cbda</a></blockquote>It is readily available on line but a rep of our supplier has warned me that importing it is illegal. She noted that our government-issued user license only permits us to receive the specified products sold by our chosen local supplier. <br /><br />In any case, it appears that none of the online producers ship to this country. We're still awaiting a response from the ones we've approached.<br /><br />We're very disappointed by this state of affairs. After consulting our cannabis guru, Elizabeth (https://elizabethaquino.blogspot.com/) and reading further about the product on line, it seems that CBDA is now our best option.<br /><br />CBD seemed to help C. back in 2015 when we started her on it. The number of daily seizures dropped and she even enjoyed isolated seizure-free days. But that's a faded memory. Her "normal" now is a daily minimum of around 4-5 seizures along with long strings of them on average four times a week.<br /><br />Elizabeth also advised tweaking the dosage of CBD and THC. We reached the maximum dose of 25 drops of CBD as recommended by our neurologist about 18 months ago. We've remained at that level ever since. But last week I began lowering it. We're currently at 23 drops. I also raised the THC to 4 drops. We give those doses 3x/day. <br /><br />It's a shame that there is nobody here, neither neurologist nor cannabis supplier, who can guide us more effectively. I'm tired of all this groping in the dark. <br /><br />Despite her constant seizure assaults, C. managed once again to perform nicely in the pool. Here is a video from her last hydro session a few days ago:<br /><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxfuRM6NnMnvoIWQGK59-uXv2lbKPe11hegBbWMgD1Mbr4M9w6CbJ3IKYBL_tcWmiBmkJch4kB1yq8w2SRcbg' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /></div>The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com2tag:blogger.com,1999:blog-5505187301023634468.post-69262742262984851262018-01-16T20:27:00.002+00:002018-01-17T20:30:43.715+00:00That pot of gold<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-7BCG2VK-hAI/Wl5eh-c05tI/AAAAAAAABy4/qeykkOyyGD4HqhkfVBLE08N3y6wnzDwAACLcBGAs/s1600/2018_01_16%2BIn%2Bthe%2Bpool.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="784" data-original-width="846" height="185" src="https://1.bp.blogspot.com/-7BCG2VK-hAI/Wl5eh-c05tI/AAAAAAAABy4/qeykkOyyGD4HqhkfVBLE08N3y6wnzDwAACLcBGAs/s200/2018_01_16%2BIn%2Bthe%2Bpool.png" width="200" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">C. gets hydrotherapy</td></tr></tbody></table>I was thrilled with C.'s hydro session this week where she surpassed last week's performance. Here she is floating unaided (over on the right).<br /><br />Her walking has also been advancing. Still nothing like what it was <b><a href="https://thesoundofthesilent.blogspot.co.uk/2016/10/liver-worries-liven-things-up.html">pre-liver saga</a></b> but better than it has been since her liver recovered. <br /><br />She's actually sturdily on her feet cooperating slightly while I move her legs. We do this for 45 minutes every night. It's so strenuous that Ive apparently injured my left hand in some way. For the last week, I've been waking up after about five hours of sleep with numbness and pain in my left fingers.<br /><br />I unearthed a hand brace which I bought many years ago. (That's no mean feat in my chaotic household.) The exercises I was doing back then with C. triggered similar symptoms in the same hand. <br /><br /><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-7B5ON_NFjPU/Wl-yOF3XXZI/AAAAAAAABzI/EJbppKAxhH8gCz2kH-Qw54bQndxiL3uLgCLcBGAs/s1600/2018_01_17%2BWhatsApp%2BImage%2B2018-01-16%2Bat%2B8.32.00%2BPM.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="360" data-original-width="202" height="320" src="https://2.bp.blogspot.com/-7B5ON_NFjPU/Wl-yOF3XXZI/AAAAAAAABzI/EJbppKAxhH8gCz2kH-Qw54bQndxiL3uLgCLcBGAs/s320/2018_01_17%2BWhatsApp%2BImage%2B2018-01-16%2Bat%2B8.32.00%2BPM.png" width="179" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Me walking C. today</td></tr></tbody></table>I've now been wearing it during the walking and while I sleep for a couple of days with amazing results. <br /><br /><b>UPDATE</b>: I wrote all that a few days ago but things aren't looking so rosy now. We get periods of intense and repeated seizures for which I give either Advil or 20 drops of Cannabis THC, or both. We're also treated periodically to those tiny eye seizures that lock her trembling eyeballs into the left side. The latter aren't as visually alarming as the whoppers but they're still very disconcerting. Needless to say, she doesn't function at her peak while in their grip which can be for over an hour.<br /><br />We're at the same 25 drops of Cannabis CBD, three times a day, 3 drops of Cannabis THC three times a day, 1,500 mg. of Keppra twice a day and 100 mg of <b><a href="https://www.vimpat.com/why-vimpat">Vimpat</a></b> twice a day. Still haven't learned if and how we can buy that <b><a href="https://www.cibdol.com/blog/368-cbd-science-the-difference-between-cbd-and-cbda">CBDA</a></b>. So, for now, I am at a loss as to what changes to make.<br /><br />That pot of gold - seizure control - seems more elusive than ever.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com1tag:blogger.com,1999:blog-5505187301023634468.post-89704496352427006612018-01-02T12:25:00.001+00:002018-01-02T12:25:29.384+00:00New year, new campaign, new drug regimen<div class="adn ads" style="-webkit-text-stroke-width: 0px; background-color: white; border-left: 1px solid transparent; color: #222222; font-family: arial, sans-serif; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; orphans: 2; padding-bottom: 0px; padding-left: 4px; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><div class="gs" style="margin-left: 30px;"><div class="ii gt adO" id=":40i" style="direction: ltr; font-size: 12.8px; margin: 5px 15px 0px 0px; padding-bottom: 5px; position: relative;"><div class="a3s aXjCH m160b6aec6f2a13e6" id=":40h" style="overflow: hidden;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-9O1FQTe9dZE/Wkt0inqCggI/AAAAAAAAByk/C5Man1Gqku84sSQ1Eqov8iS3l4qJbwahwCLcBGAs/s1600/2018_01_02%2BIn%2Bthe%2Bpool%2Blast%2Bweek.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="375" data-original-width="442" height="271" src="https://3.bp.blogspot.com/-9O1FQTe9dZE/Wkt0inqCggI/AAAAAAAAByk/C5Man1Gqku84sSQ1Eqov8iS3l4qJbwahwCLcBGAs/s320/2018_01_02%2BIn%2Bthe%2Bpool%2Blast%2Bweek.png" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">C. in the hydro pool a week ago</td></tr></tbody></table><div dir="ltr">Last week, C. had her first hydro session since being hospitalized. We were all blown away to see her float with her usual finesse as if she hadn't just been through a 3 week hospitalization for <a href="https://en.wikipedia.org/wiki/Status_epilepticus"><i>status epilepticus</i></a>.</div><div dir="ltr">&nbsp;</div><div dir="ltr">And the previous day, I gave her <a href="https://en.wikipedia.org/wiki/Tetrahydrocannabinol">THC</a> for a sudden seizure surge. That's happened a few times lately. Occasionally she has a fever so I only give her Advil to control them. But with her status experience still so fresh, each increase in seizures is unsettling.&nbsp;</div><div dir="ltr">&nbsp;</div><div dir="ltr">I've been busy writing about my pet peeve: institutionalization of people with disabilities. As I've shouted from the rooftops, that practice is rampant and accepted in these here parts.</div><div dir="ltr">&nbsp;</div><div dir="ltr">During C.'s hospitalization, one of the doctors on the team suggested to the Hubby: "Why don't you put her in some sort of medical facility?" That was after the team had reined in her seizures with a cocktail of powerful drugs that left her near-comatose. We were wondering how we'd care for her at home in that state. The "send her away" suggestion was that doctor's response. (<a href="http://thesoundofthesilent.blogspot.com/2017/11/baby-steps.html"><b>Here</b>'s what happened afterwards</a>.)<br />&nbsp;</div><div dir="ltr">I was encouraged to learn about a new local grass-roots movement against institutionalization. Its specific goal is to win government-funded personal aides for people with disabilities along with the right to live wherever they choose to within the community. Exactly what I've been hankering for! Our national center for human rights for people with disabilities is promoting the campaign. <br />&nbsp;</div><div dir="ltr">A creative approach to achieving that is to dissuade those benevolent people who volunteer at and donate to such institutions from doing so.<b> <a href="http://www.czech.wearelumos.org/about"> Lumos</a></b> - founded by J.K. Rowling - is at the forefront:of that push. <br /><br />Here is what Georgette Mulheir, Chief Executive of Lumos <b><a href="https://www.huffingtonpost.com/georgette-mulheir/-voluntourism-harms-not-h_b_11653292.html">had to say</a></b> about that:&nbsp;</div><div dir="ltr"><blockquote class="tr_bq">"More than 80 percent of children in the world’s orphanages have at least one living parent and most have relatives. They should be at home with their families, not in institutions. What orphanage children and their parents really need is to be reunited, with all the supports and services that will enable those families - no matter how poor - to give their children what they need to thrive and reach their full potential.<br /><br />J.K. Rowling, the founder of Lumos, who has spoken out against orphan voluntoursim frequently on Twitter, could not have put it better: “ Voluntourism is one of drivers of family break up in very poor countries. It incentivizes ‘orphanages’ that are run as businesses. Globally poverty is the no. 1 reason that children are institutionalized. Well-intentioned Westerners supporting orphanages perpetuate this highly damaging system and encourage the creation of more institutions as money magnets.”<br /><br />Yet evidence suggests the number of children going into orphanages in some parts of the world is increasing."</blockquote>Wishing everyone a happy, healthy, seizure-free and de-insitutionalized 2018! <br /><br />P.S. Last night I began giving C. a daily dose of THC. For the next couple of days, it'll be just one drop 3x/day but I'm planning to raise it gradually. I'm winging this; no doctor has recommended it but Elizabeth Aquino - my cannabis guru - gives it to her Sophie with CBD.</div></div></div></div></div><div class="gA gt acV" style="-webkit-text-stroke-width: 0px; background: rgb(255, 255, 255); border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top: none; color: #222222; font-family: arial, sans-serif; font-size: 12.8px; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; margin: 0px; orphans: 2; padding: 0px; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; width: auto; word-spacing: 0px;"><div class="gB xu" style="border-top: 0px; padding: 0px;"><div class="ip iq" style="border-top: 1px solid rgb(216, 216, 216); clear: both; margin: 0px 5px 0px 0px; padding: 8px 0px 0px 4px;"><div id=":3yx"><table class="cf FVrZGe" role="presentation" style="border-collapse: collapse;"><tbody><tr><td class="amq" style="font-family: arial, sans-serif; margin: 0px; padding: 0px 8px 1px 1px; vertical-align: top; width: 44px;"><img class="ajn bofPge" id=":0_420" name=":0" src="https://plus.google.com/u/0/_/focus/photos/public/AIbEiAIAAABDCOC-lO-32P3YXiILdmNhcmRfcGhvdG8qKGQ5YjFmZGQzMzQ1YWM4MjJhMDMxNjFhNzgyNGFiYjc5NTAyMWYzYjAwAYYeqskqbSyN7IBbt-tbVA5uSw8u?sz=24" style="display: block; height: 24px; width: 24px;" /></td><td class="amr" style="font-family: arial, sans-serif; margin: 0px; padding: 0px; width: 1255.2px;"><div class="nr tMHS5d" style="background-color: white; border-color: rgb(192, 192, 192) rgb(217, 217, 217) rgb(217, 217, 217) !important; border-image: initial !important; border-radius: 1px; border-style: solid !important; border-width: 1px !important; box-sizing: border-box; color: #222222; margin: 0px 0px 0px -1px !important; padding: 0px; transition: none;"><div class="amn" style="color: #999999; height: 64px; padding: 8px 0px 0px 12px;">Click here to<span>&nbsp;</span><span class="ams bkH" id=":3yl" role="link" style="cursor: pointer; text-decoration: underline;" tabindex="0">Reply</span><span>&nbsp;</span>or<span>&nbsp;</span><span class="ams bkG" id=":3yn" role="link" style="cursor: pointer; text-decoration: underline;" tabindex="0">Forward</span></div></div></td></tr></tbody></table></div></div></div></div>The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-67837843966375141812017-12-05T20:17:00.000+00:002017-12-05T20:18:39.840+00:00No place like home<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ogYX6SHlasY/Wib-mbgLlVI/AAAAAAAAByU/dlCOWuC1rCwGkuYk3VhaGo-68y2Jon_iQCLcBGAs/s1600/2017_12_05%2Bmulti-ethnic-medical-staff-child-patient-hospital-treatment_nkq1kndje__S0000.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="156" data-original-width="317" height="195" src="https://1.bp.blogspot.com/-ogYX6SHlasY/Wib-mbgLlVI/AAAAAAAAByU/dlCOWuC1rCwGkuYk3VhaGo-68y2Jon_iQCLcBGAs/s400/2017_12_05%2Bmulti-ethnic-medical-staff-child-patient-hospital-treatment_nkq1kndje__S0000.png" width="400" /></a></div>We are reveling in the pleasure of being home since Thursday evening.<br /><br />It's still a godsend just not having C. supine day and night, not waiting interminably for her to open her mouth to be spoon fed, not having to beg a few drops of milk from the nurses for a cup of coffee, not fighting fatigue while driving home through torrential rain at 11:30 pm (with a cataract in one eye!) And, of course, for Hubby there's the treat of sleeping in a bed rather than a chair and for more than three hours.<br /><br />Even C.'s inability to stand and walk as she previously did isn't concerning me yet. Just as she has regained her ability to raise her spoon to her mouth and feed herself, I'm hoping her other skills will follow suit.<br /><br />Seizures have not been banished. They are still a daily feature and each one still whacks me in the gut. I'm just praying they remain at their current reasonable (for C., that is) number.<br /><br />I'm still somewhat apoplectic over the gulf there was between the "team's" approach to C.'s drug regimen and that of the new doctor who appeared only in week three of C.'s hospitalization. Within four days, he had removed Frisium and Phenytoin - two drugs that the "team" insisted C. would go home with.<br /><br />Never mind that the regimen was rendering her incapable of eating or staying awake for more than an hour at a time.<br /><br />I shudder to think where C. would be if he hadn't materialized. There must be plenty of patients who never benefit from his input. He spends three weeks of each month glued to his screen, scrutinizing imaging and other data from overseas stroke patients and prescribing treatment accordingly. Salaries here just aren't enticing enough for full time employment.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com1tag:blogger.com,1999:blog-5505187301023634468.post-91612216905048850432017-11-29T06:57:00.001+00:002017-11-29T07:29:42.353+00:00Baby-steps<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-6nFbqi6ePdA/Wh5Z_tGHd9I/AAAAAAAAByE/oL_Cc5YcGWIWQSqLQDb8RtIUoACqB-tCQCLcBGAs/s1600/2017_11_27%2BFirst%2Bexcursion%2B212357.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="471" data-original-width="363" height="320" src="https://2.bp.blogspot.com/-6nFbqi6ePdA/Wh5Z_tGHd9I/AAAAAAAAByE/oL_Cc5YcGWIWQSqLQDb8RtIUoACqB-tCQCLcBGAs/s320/2017_11_27%2BFirst%2Bexcursion%2B212357.jpg" width="246" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">At last, C. is out of bed and able to be wheeled<br />around the ward</td><td class="tr-caption" style="text-align: center;"><br /></td></tr></tbody></table>Well, this discharge is proving elusive.<br /><br />Saturday was pretty disappointing with C. extremely sleepy, even lethargic. The IV fluids were discontinued in the afternoon to test her capacity for drinking and eating enough by mouth. It didn't look promising, as she clamped her mouth shut in response to the spoon and bottle.<br /><br />Nightime brought the icing on the cake - copious vomiting immediately after a small meal I'd coaxed into her.<br /><br />The junior neurologist ordered blood tests and a chest x-ray without delay although C. had no fever or cough. She didn't say why. But our next-door neighbor, a <a href="https://www.healthline.com/health/what-is-a-pulmonologist">pulmonologist</a>, later explained that it was a routine procedure to rule out aspiration of vomit. It would have been nice for the neurologist to note that.<br /><br />I went home to sleep, consumed by guilt over her vomiting - which everyone intimated was my fault. (While the hubby stayed in the hospital as he's been doing every night. Yes, I know, he's a treasure.) <br /><br />The following morning I awoke to a WhatsApp message from him that read like a hallucination:<br /><blockquote class="tr_bq">"The resident for this coming week is Dr. J.K. He was here now with Dr. L. and Dr. M. in tow [<i>two more junior neurologists who have been treating C. until now</i>]. He agrees with everything you say. He's immediately taking her off Phenytoin as the first step in reducing the drug regimen and getting her out of the current apathy/lethargy. Next culprit in his eyes is Vimpat of which he says she's getting too much for her size."</blockquote>C., now off Frisium and Phenytoin, has been progressing in baby steps. With my maternal magnifying glass, though, they appear as giant leaps.<br /><br />For instance, she's begun opening her mouth for food. And when we wheeled her around the ward tonight for the second time, she lifted her head more frequently than she did last night.<br /><br />And, of course, equally significant, the seizures are infrequent and mild, thank heavens. But you know the score: keep that one hush, hush.<br /><br />This godsend of a neurologist departs the ward at the end of the week for overseas where he works over the next three weeks. He's promised to be a consultant for C.'s care via her regular neurologist - who was his student once upon a time. But it remains to be seen how that will pan out.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com4tag:blogger.com,1999:blog-5505187301023634468.post-56058106299215840872017-11-25T22:43:00.003+00:002017-11-26T19:40:50.262+00:00A dismal discharge<div class="separator" style="clear: both; text-align: center;"><a href="https://4.bp.blogspot.com/-hWStUT7NnsU/WhnzF0YJnOI/AAAAAAAABx0/5OhyeUBfSkcQBKhnaX7eIfUQ4uQOo3o0gCLcBGAs/s1600/2017_11_26%2BHand%2Bwith%2Bdrug%2Bport%2B-%2Bstock%2Bimage.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="340" data-original-width="620" height="218" src="https://4.bp.blogspot.com/-hWStUT7NnsU/WhnzF0YJnOI/AAAAAAAABx0/5OhyeUBfSkcQBKhnaX7eIfUQ4uQOo3o0gCLcBGAs/s400/2017_11_26%2BHand%2Bwith%2Bdrug%2Bport%2B-%2Bstock%2Bimage.jpg" width="400" /></a></div>We are now hopeful that C. will be released from hospital tomorrow. Well, I'm not certain "hopeful" is all that accurate given the trepidation I'm feeling about the prospect. C. will be returning home on four anti-epileptics. She left 18 days ago on one! (excluding cannabis).<br /><br />She will also be returning in an extremely sleepy state and without any appetite.<br /><br />What has been achieved is a halt to her S<a href="https://en.wikipedia.org/wiki/Status_epilepticus">tatus Epilepticus</a>. I realize I'm supposed to be grateful for that. But given the high price we've paid - the loss of every ounce of functioning she previously had - I'm finding that hard.<br /><br />None of the staff dares predict whether this is a temporary phenomenon.<br /><br />They are just as vague about how long they'd like her to stay on her current drug cocktail. They maintain that there's no way to ascertain which one actually did the zapping so it's risky to remove any. They say eventually her neurologist will guide us on weaning C. off most of them.<br /><br />To quote myself: I'll believe it when I see it. The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com1tag:blogger.com,1999:blog-5505187301023634468.post-74483178412615899642017-11-16T20:38:00.003+00:002017-11-16T22:53:29.871+00:00Rising stress<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-dONCqaqMdX0/Wg32V9Cy3ZI/AAAAAAAABxc/XbWu7nAWrSk74tNtcjOsc1VRomwMfM2FQCLcBGAs/s1600/2017_11_16%2BNurse%2Battaching%2BIV%2Bdrip.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="597" data-original-width="825" height="231" src="https://1.bp.blogspot.com/-dONCqaqMdX0/Wg32V9Cy3ZI/AAAAAAAABxc/XbWu7nAWrSk74tNtcjOsc1VRomwMfM2FQCLcBGAs/s320/2017_11_16%2BNurse%2Battaching%2BIV%2Bdrip.png" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">IV Drip</td></tr></tbody></table>Nothing uplifting to report about C.<br /><br />When the hospital doctors tried stopping the IV Dormicum (aka <b><a href="https://en.wikipedia.org/wiki/Midazolam">Midazolam</a></b>), she returned to <a href="https://en.wikipedia.org/wiki/Status_epilepticus">Status Epilepticus </a>with a vengeance within a couple of hours (one minute between seizures). <br /><br />So she was rehooked-up immediately to the stuff.<br /><br />Then today the doctor lowered the dose from 3% to 1% and before our very eyes she began seizing again. So he promptly re-raised it and the seizures disappeared. Not much of a solution.<br /><br />I inquired about the longer term plan.<br /><br />He told me their plan was to get her off Dormicum and replace it with an oral <a href="https://en.wikipedia.org/wiki/Benzodiazepine" title="Benzodiazepine">benzodiazepine</a>, Frisium (aka <b><a href="https://en.wikipedia.org/wiki/Clobazam">Clobazam)</a></b>; raise her Keppra (aka<b><a href="https://www.google.co.il/url?sa=t&amp;rct=j&amp;q=&amp;esrc=s&amp;source=web&amp;cd=4&amp;cad=rja&amp;uact=8&amp;ved=0ahUKEwiEm8TarcPXAhWD2aQKHRM1AdsQFgg2MAM&amp;url=https%3A%2F%2Fen.wikipedia.org%2Fwiki%2FLevetiracetam&amp;usg=AOvVaw1f8dRe_-hznEzRgMIojaK6"> Levetiracetam</a></b><a href="https://www.google.co.il/url?sa=t&amp;rct=j&amp;q=&amp;esrc=s&amp;source=web&amp;cd=4&amp;cad=rja&amp;uact=8&amp;ved=0ahUKEwiEm8TarcPXAhWD2aQKHRM1AdsQFgg2MAM&amp;url=https%3A%2F%2Fen.wikipedia.org%2Fwiki%2FLevetiracetam&amp;usg=AOvVaw1f8dRe_-hznEzRgMIojaK6">) </a>dose; stop the <b><a href="https://en.wikipedia.org/wiki/Phenytoin">Phenytoin</a></b>; and continue with Vimpat (aka <a href="https://en.wikipedia.org/wiki/Lacosamide"><b>Lacosamide</b></a>) aiming to raise it from 100 mg twice a day to 200 mg twice a day.<br /><br />Can't imagine there will be much of C. left on that potent a cocktail.<br /><br />At the same time he said the team is encouraging continuation of Cannabis CBD and THC.<br /><br />That's all very nice (I'm referring to the cannabis green light) but there's no point in giving THC if she has already been zapped with the other stuff. How will we know whether it's worked? <br /><br />And we are currently allotted such a small quantity by the government's medical cannabis agency. We'd need a lot more to administer it freely.<br /><br /><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-eBnfPE4wcXY/Wg33HjyDjFI/AAAAAAAABxk/-sa9Z0ZIbXA1fVng-j2s30f3fp2PIh6NwCLcBGAs/s1600/2017_11_16%2BPortrait%2Bin%2Bhospital.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1462" data-original-width="1108" height="320" src="https://2.bp.blogspot.com/-eBnfPE4wcXY/Wg33HjyDjFI/AAAAAAAABxk/-sa9Z0ZIbXA1fVng-j2s30f3fp2PIh6NwCLcBGAs/s320/2017_11_16%2BPortrait%2Bin%2Bhospital.png" width="242" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">A quick bedside sketch</td></tr></tbody></table>I'm giving CBD whenever she's sufficiently awake to enable me. But that's rarely.<br /><br />Well, if any of you would not find the above stressful, please let me know. Because the senior neurologist who dealt with yesterday's setback told the hubby: "<i>Your wife seems very stressed. She reminds me of my mother. I see I can't share all information with her</i>."<br /><br />Who knew senior neurologists go in for crude mansplaining?<br /><br />PS: C.'s own neurologist came by today after being away all week. She offered the option of an induced coma which would entail <b><a href="https://en.wikipedia.org/wiki/Intubation">intubation</a></b> accompanied by the risk of C. never being able to breath independently again. I said thanks but no thanks.<br /><br />She then warned that even C's current treatment protocol could at some point necessitate intubation. Would we agree to that? Something to ponder.<br /><br />But, of course, not get stressed over. Perish the thought.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com5tag:blogger.com,1999:blog-5505187301023634468.post-7928211788076054672017-11-11T22:41:00.002+00:002017-11-13T21:24:34.693+00:00Stuck in status - Part 3<div class="separator" style="clear: both; text-align: center;"></div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-_dp_nSaJgAE/WgoNZsuuHBI/AAAAAAAABxM/GQ7llbd2Qv4TaM-7LJChK4rMtZATBxLswCLcBGAs/s1600/2017_11_13%2BC%2Bin%2Bhospital%2Bbed%2Bwith%2Bfroggie.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="593" data-original-width="360" height="320" src="https://1.bp.blogspot.com/-_dp_nSaJgAE/WgoNZsuuHBI/AAAAAAAABxM/GQ7llbd2Qv4TaM-7LJChK4rMtZATBxLswCLcBGAs/s320/2017_11_13%2BC%2Bin%2Bhospital%2Bbed%2Bwith%2Bfroggie.png" width="194" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">C. and friend in her hospital bed</td></tr></tbody></table>Written Saturday, November 11<br /><br />We're still in the hospital, third day running, but no longer in the Emergency Room. Now we're in the ward.<br /><br />The major seizures are nearly under control and feeding C. meals is much easier. She even seems to have a better appetite than usual. <br /><br />The severe seizures do still erupt from time to time. We've also noticed some small, new sorts involving only the face or only her right arm and hand.<br /><br />A neurologist came by today and promised he'd order another EEG to ascertain whether those new movements are actually seizures.<br /><br />The doctors are piling on the drugs like there's no tomorrow. When I expressed concern about that, the neurologist promised that two of them will be removed as soon as she's stabilized but I'll believe that when I see it.<br /><br />So C.'s drug tally now stands at: <a href="https://www.drugs.com/keppra.html">Keppra (also know</a><a href="https://www.drugs.com/keppra.html">n </a><a href="https://www.drugs.com/keppra.html">as </a><span style="color: black;"><a href="https://www.drugs.com/mtm/levetiracetam.html">Levetiracetam</a></span><a href="https://www.drugs.com/keppra.html"> a</a><a href="https://www.drugs.com/keppra.html">nd</a><a href="https://www.drugs.com/keppra.html"> given IV while in hospital)</a>; IV <a href="https://en.wikipedia.org/wiki/Phenytoin">Phenytoin (aka Dilantin)</a> (to replace the <a href="https://reference.medscape.com/drug/valium-diastat-diazepam-342902">IV Valium (Diazepam)</a> which was ineffective); oral <a href="https://www.google.co.il/url?sa=t&amp;rct=j&amp;q=&amp;esrc=s&amp;source=web&amp;cd=1&amp;cad=rja&amp;uact=8&amp;ved=0ahUKEwjig--wxrfXAhXJEuwKHYkbBnAQFggmMAA&amp;url=https%3A%2F%2Fwww.drugs.com%2Fvimpat.html&amp;usg=AOvVaw3waXqRwHt50uoD6GIQDyPp">Vimpat (aka Lacosamide)</a>; <a href="https://en.wikipedia.org/wiki/Cannabidiol">Cannabis CBD (Cannabidiol)</a>; <a href="https://www.healthline.com/health/pain-relief/ibuprofen-advil-side-effects">Advil (aka Ibuprofen)</a> for her central fevers which are proliferating; and <a href="https://en.wikipedia.org/wiki/Tetrahydrocannabinol">Cannabis THC (aka Tetrahydrocannabinol)</a> for strings of seizures without fever.<br /><br />As you see, the positive news is in short supply.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-76194662899801447092017-11-11T22:40:00.004+00:002017-11-11T22:40:59.149+00:00Stuck in status - Part 2<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-KMCuLeMOAiw/Wgd5SQI25pI/AAAAAAAABwk/6SEoVZanc8IPwzbVIBwfcHORXjZ_K6hUwCLcBGAs/s1600/2017_11_12%2BUndergoing%2BEEG.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="356" data-original-width="360" height="197" src="https://3.bp.blogspot.com/-KMCuLeMOAiw/Wgd5SQI25pI/AAAAAAAABwk/6SEoVZanc8IPwzbVIBwfcHORXjZ_K6hUwCLcBGAs/s200/2017_11_12%2BUndergoing%2BEEG.png" width="200" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Doing the EEG</td></tr></tbody></table>Written Friday, November 10 (but posted on November 11)<br /><br />Well, 20 hours later we are ensconced in the ER and, true to form, the medical team is swamped. In the last eight hours not much has been done for C.<br /><br />Here's the sum total of intervention thus far:<br /><ol><li>An EEG (see the photo). No surprises. The usual haywire scribbles.</li><li>Two rounds of Valium IV (intravenous). Result: Longer intervals between seizures and an "out" C.</li><li>Keppra IV - even though she received her morning dose before we got here. No clue as to reason. Didn't bother asking. </li><li>First dose of Vimpat. The neurologist intended to start her on that but she later learned that the hospital's wards had none and that the hospital pharmacy was closed. She notified us she'd give something else instead of Vimpat when I remembered having purchased some a year ago. The neurologist had first given us a prescription for it - to replace Valproic Acid - but then nixed it at the last minute. She had discovered it poses a slight risk of liver damage. Not something we needed again. But I had already bought the stuff so I stashed it away in my old-drug closet.</li></ol>So I brought it from home and C. has had her first dose of Vimpat. Sometimes it pays to be a hoarder.<br /><br />She's had only one meal today. The rest of the day, due to her seizures or her Valium-induced sleep, eating wasn't feasible.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-48463717193957722142017-11-11T22:40:00.002+00:002017-11-11T22:40:22.425+00:00Stuck in status - Part 1<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-20obrEazOS8/Wgd6J4LC4sI/AAAAAAAABws/i6lOeQknb2MMbZkRBT0kK8b75Zadhi34gCLcBGAs/s1600/2017_11_09%2BGrimacing.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="478" data-original-width="360" height="200" src="https://1.bp.blogspot.com/-20obrEazOS8/Wgd6J4LC4sI/AAAAAAAABws/i6lOeQknb2MMbZkRBT0kK8b75Zadhi34gCLcBGAs/s200/2017_11_09%2BGrimacing.png" width="150" /></a></div>Written Wednesday night, November 8 (but posted on November 11)<br /><br />I have just spent three hours getting a meal into C. She takes forever to swallow the smallest mouthful. Throughout, she was having small seizures that affected her face. (That grimace in the photo is relatively new to us.) Now have put her to bed but she has begun to have really hard seizures affecting her entire body, and every five minutes or so. I am at a loss.<br /><br />She had a fever a few hours ago so I gave her Advil followed by Cannabis THC and the hard seizures subsided. But now they've resumed and without any fever.<br /><br />I am loathe to give her another round of THC only four hours after the last. Haven't touched the rectal Diazepam - wary of it.<br /><br />Tomorrow we have an appointment with C.'s neurologist but still must get through this night. I often wonder what I did to deserve this.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-20388272782123899462017-11-06T05:08:00.005+00:002017-11-06T05:08:51.895+00:00Status Epilepticus strikes C.<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-b0V5SEkV1-U/Wf_tiUnlU4I/AAAAAAAABwU/zQjOHVZLap80LFGyhUpLBPKItiLGZnG6wCLcBGAs/s1600/2017_11_06%2BDiazepam6.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="211" data-original-width="352" height="191" src="https://1.bp.blogspot.com/-b0V5SEkV1-U/Wf_tiUnlU4I/AAAAAAAABwU/zQjOHVZLap80LFGyhUpLBPKItiLGZnG6wCLcBGAs/s320/2017_11_06%2BDiazepam6.png" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">From an <a href="https://www.healthhub.sg/a-z/medications/72/How-To-Use-Rectal-Diazepam">online guide</a> to administering Diazepam rectally</td></tr></tbody></table>We are enduring rough seizure-laden days. C. has even gotten tangled in <a href="https://www.epilepsy.com/learn/challenges-epilepsy/seizure-emergencies/status-epilepticus">status epilepticus </a>a couple of times. It's reached the point where a few hours' stretch without seizures is pure heaven.<br /><br />This bad run began out of the blue on Friday. As usual, there is no change in her routine or in her diet we can blame.<br /><br />The Cannabis THC did work this morning, zapping a particularly intense status session. But after my daughter-the-dentist reminded me of it, I asked C.'s pediatrician for a <b><a href="http://www.netdoctor.co.uk/medicines/brain-and-nervous-system/a7572/stesolid-diazepam/">Stesolid</a></b> script.<br /> <br />So we are now stocked with two boxes of 10 mg Diazapam rectal tubes (the equivalent of Stesolid). We haven't used the stuff in at least a decade but it seems a better option than the ER. We are braced for a fresh round of this curse.<br /><br />PS: The dreaded status struck again tonight. THC took a little longer to work but eventually reined in the seizures. To inject some variety, C. has also vomited twice in the last 24 hours, raising the suspicion that there's something non-neurological underlying this mess. If there's no improvement tomorrow, we will try to do blood tests. The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com1tag:blogger.com,1999:blog-5505187301023634468.post-2419240269956183252017-10-30T21:34:00.002+00:002017-11-16T20:47:29.814+00:00Bracing<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-_1PsXLCRNGk/WfeYDZY32NI/AAAAAAAABwE/0uYmloZAfcoRGYBI6TQAOtOuKFZIYHp8gCLcBGAs/s1600/2017_10_30%2BAt%2Bthe%2Bbracemaker%2B113931.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="468" data-original-width="360" height="320" src="https://4.bp.blogspot.com/-_1PsXLCRNGk/WfeYDZY32NI/AAAAAAAABwE/0uYmloZAfcoRGYBI6TQAOtOuKFZIYHp8gCLcBGAs/s320/2017_10_30%2BAt%2Bthe%2Bbracemaker%2B113931.png" width="246" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">At the bracemaker</td></tr></tbody></table>Last week we took C. to our local brace-maker and repairer.<br /><br />The team at the wound clinic had warned us the previous day that a fresh pressure sore was about to erupt on her left foot and that the old one wasn't totally healed. They blamed her brace. I am loathe to let a day go by without standing C. up - actually, obsessive would be more precise. Since she can't stand at all without that brace, we raced to the brace guy the very next day.<br /><br />The brace-guy refused make a new one until C. has been examined by an orthepedist because he suspects that the problem warrants surgery first.<br /><br />But he did make a few temporary changes to her old brace and for some reason waived a fee. Previously the hubby - unaccompanied by C. and me - had brought him C.'s brace for repairs and found him to be surly. I attribute the guy's transformation to the pathetic image that C. and I present.<br /><br />C.'s appointment with a "rehabilitative orthopedist" to assess her braced foot is in two weeks.<br /><br />Interestingly, the spot that concerned the wound team has actually been in that state for ages and still isn't worsening even though I continue to stand her up every night.<br /><br />Speaking of C.'s standing, as I've previously mentioned, it has deteriorated dramatically over the past year. Despite my obsession and hard work, she remains wobbly and can just barely take a few steps with enormous support from me.<br /><br />The days when C. and I wowed the therapists with her standing and walking are a distant memory. And one I doubt will ever be a reality again. The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com1tag:blogger.com,1999:blog-5505187301023634468.post-64744248526022404592017-10-18T11:53:00.000+01:002017-10-21T21:44:08.913+01:00Meeting the merry-go-roundThis week, at the age of 22, C. finally had her first playground ride.<br /><br />Not that she hasn't been to playgrounds often. Most offered.the latest, trendiest equipment. But none of them had anything C. could use. After I mentioned disability-friendly public-space equipment last month [here "<a href="https://thesoundofthesilent.blogspot.ca/2017/09/a-small-cannabis-victory-and-mysterious.html"><b>A small cannabis victory and a mysterious laugh</b>"]</a> and in August 2016 [here:<a href="https://thesoundofthesilent.blogspot.co.il/2016/08/still-plagued-by-pressure-sores-c.html"> "<b>Still plagued by pressure sores, C. graduates</b>"]</a>, I learned that in our hometown there's a wheelchair-accessible merry-go-round. <br /><br />So this week we drove twenty minutes to the huge playground behind the city's zoo. The said merry-go-round stood alone among many other state of the art gadgets for the non-disabled. I only found it after a careful search because there's no sign anywhere to point it out. <br /><br />C. isn't giving anything away, as you can see in the photo but it was truly a worthwhile outing. The ride, imported from the UK, was safe, easy to use and a real novelty for her.<br /><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://4.bp.blogspot.com/-cpkdoo4q6lY/WecyEejnaKI/AAAAAAAABv0/-s4572FvlNciEStephO1HixgfkicD7vDQCLcBGAs/s1600/2017_10_18%2BCarousel.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="346" data-original-width="432" height="256" src="https://1.bp.blogspot.com/-62Ob1RGZ1wM/Wecxkd1q2hI/AAAAAAAABvs/pAIp9ukwpY094qe89ez0cX_aXctZ0dmNgCLcBGAs/s320/2017_10_18%2BElvie%2Bpushes%2BC%2Bon%2Bspecial%2Bcarousel%2B164023.jpg" width="320" /></a><a href="https://4.bp.blogspot.com/-cpkdoo4q6lY/WecyEejnaKI/AAAAAAAABv0/-s4572FvlNciEStephO1HixgfkicD7vDQCLcBGAs/s1600/2017_10_18%2BCarousel.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="243" data-original-width="432" height="180" src="https://4.bp.blogspot.com/-cpkdoo4q6lY/WecyEejnaKI/AAAAAAAABv0/-s4572FvlNciEStephO1HixgfkicD7vDQCLcBGAs/s320/2017_10_18%2BCarousel.jpg" width="320" /></a></div><br />Yesterday C. had her first hydro session in two weeks because the therapy pool had been closed for vacation. While I couldn't be there to watch, her caregiver took dozens of photos and it was clearly a success.<br /><div class="separator" style="clear: both; text-align: center;"><a href="https://3.bp.blogspot.com/-8oNsWlgE0iM/WecxZhHx8bI/AAAAAAAABvo/kMR6DT00giEhR5pLIpAWYQfATJCov7k3ACLcBGAs/s1600/2017_10_17%2BHydro.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1336" data-original-width="900" height="320" src="https://3.bp.blogspot.com/-8oNsWlgE0iM/WecxZhHx8bI/AAAAAAAABvo/kMR6DT00giEhR5pLIpAWYQfATJCov7k3ACLcBGAs/s320/2017_10_17%2BHydro.jpeg" width="215" /></a></div><br />Back at home I snapped C. looking particularly beautiful:<br /><div class="separator" style="clear: both; text-align: center;"><a href="https://3.bp.blogspot.com/-EYcLj3OjduQ/WecxMzbmYGI/AAAAAAAABvk/4zGB2VbCh5kRea0uK_sfXn44yOvvexrhQCLcBGAs/s1600/2017_10_17%2BPensive%2B200657.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1368" height="320" src="https://3.bp.blogspot.com/-EYcLj3OjduQ/WecxMzbmYGI/AAAAAAAABvk/4zGB2VbCh5kRea0uK_sfXn44yOvvexrhQCLcBGAs/s320/2017_10_17%2BPensive%2B200657.jpg" width="273" /></a></div>But just to emphasize the cruel capriciousness of her epilepsy, within five minutes of that shot she was in the grip of a fierce seizure. The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com1tag:blogger.com,1999:blog-5505187301023634468.post-63869633172434621002017-10-09T04:48:00.004+01:002017-10-09T09:51:12.780+01:00Uplifted by Downs<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-lKF5dowcsOk/WdqSUgvHBDI/AAAAAAAABvM/_d5rZZfK03kktUy8eS05hnYrL7p-tinmwCLcBGAs/s1600/2017_10_09%2BIsaac%2BLevya.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="690" data-original-width="763" height="289" src="https://4.bp.blogspot.com/-lKF5dowcsOk/WdqSUgvHBDI/AAAAAAAABvM/_d5rZZfK03kktUy8eS05hnYrL7p-tinmwCLcBGAs/s320/2017_10_09%2BIsaac%2BLevya.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Isaac Levya, actor</td></tr></tbody></table>It's been a while since the last post but not much has happened. Still the daily 3-5 intense seizures which wear me down.<br /><br />So we finally wrote to the neurologist for guidance, enquiring specifically about starting a daily dose of <b>THC</b> to try and tackle them. (We now thankfully have a precious new bottle of the stuff.)<br /><br />She recommended that we raise the dose of <b><a href="https://www.rxlist.com/keppra-drug.htm">Keppra</a></b> by 250 mg/day. But our THC idea didn’t appeal to her. She noted that a colleague who is more knowledgeable about cannabis assured her there is no evidence that THC affects seizures in any way, notwithstanding our anecdotal evidence to the contrary.<br /><br />Nevertheless, she OKed one drop of it/day maximum.<br /><br />For now, we’re trying the additional Keppra, so far without success. We’ll give it 2-3 weeks and then return to the previous dose of 2,500 mg./day. Afterwards we’ll try that daily drop of THC. Not that I have any hope a micro-dose like that will help. To zap C.’s long strings of seizures, we give 17 drops.<br /><br />I’ve been encountering many <a href="https://en.wikipedia.org/wiki/Down_syndrome">Downs children</a> lately when I pick up one of my grand-daughters from kindergarten. She attends a semi inclusive kindergarten. That translates into a small group of Downs students joining her “typical” class for a couple of hours each morning. The group then returns to its segregated class for the rest of the day.<br /><br />I know, I know, that’s just token inclusion and the school could do more. But it’s better than none at all.<br /><br />I mention this because I’ve noted how longingly I watch the Downs kids. I envisage the rosy life we’d have if only C. had been blessed with Downs instead of the disabilities she’s lumbered with.<br /><br />That’s quite a switch from the days of my pregnancies when my deepest dread was giving birth to a Downs baby. It seemed the direst scenario possible.<br /><br />Live and learn.<br /><br />A propos of Downs Syndrome, I just learned of a film starring a Downs actor, <a href="https://en.wikipedia.org/wiki/Any_Day_Now_(2012_film)">"<b><i>Any Day Now</i></b>"</a>. As usual, I’m playing catch up – the film was released back in 2012. It hasn’t aired yet on TV in these parts so I’ve only seen clips from it on YouYube. It strikes me as a gem and the many awards it’s won attest to that.<br /><br />Playing alongside its stars, Alan Cumming and Garret Dillahunt, is a young actor with Downs, Isaac Levya. The film is about a gay couple in the 'seventies trying to adopt a child with Downs Syndrome and the legal battles they face along the way. In an interview [<b><a href="http://kdvr.com/2017/09/29/any-day-now/">here</a></b>], Dillahunt describes Levya’s professionalism and how, during filming, Levya would occasionally tell his co-actors: “Give me some quiet; I’m trying to get in character”.<br /><br />He attends acting school, auditioned for the part and endearingly discusses his acting experiences <a href="https://www.youtube.com/watch?v=sWTHjnoFwks">here</a>.<br /><br />I live in a place where mothers are still known to abandon Downs newborns in the hospital and where some who do bring them home later institutionalize them. Success stories like Isaac Levya's are particularly uplifting in this environment. The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-43857368163519607602017-09-08T15:39:00.001+01:002017-09-09T18:51:55.972+01:00A small cannabis victory and a mysterious laugh<div class="separator" style="clear: both; text-align: center;"><a href="https://2.bp.blogspot.com/-5Xd5MfdYFZU/WbKriQj6jGI/AAAAAAAABuo/oE6unJTlY-Ys6xZHlHFQM996YiC8BE36wCLcBGAs/s1600/2017_09_08%2BTHC%2Bdrops.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="300" data-original-width="300" src="https://2.bp.blogspot.com/-5Xd5MfdYFZU/WbKriQj6jGI/AAAAAAAABuo/oE6unJTlY-Ys6xZHlHFQM996YiC8BE36wCLcBGAs/s1600/2017_09_08%2BTHC%2Bdrops.jpg" /></a></div>Since Wednesday, I've been revelling in giving C. her full dose of CBD. That's when our cannabis provider notified us that the government's health authority granted us a new license with the increase we'd requested (more like begged for) in our monthly allotment of cannabis.<br /><br />This license entitles us to take that extra bottle either as CBD or as THC. So we've got one bottle awaiting us for August which we'll take as THC. I intend to begin experimenting with a very low daily dose of THC.<br /><br />Then, starting with our September batch, we'll opt for an extra bottle of CBD bringing our total to 11 per month.<br /><br />It's unclear why the government officials acquiesced after initially refusing. But C.'s neurologist earnestly went to bat for us with a written complaint and a nudge to her colleague with some position in the government's cannabis section. Presumably her efforts played a role.<br /><br />All this has renewed my pride in this country's trailblazing in the field of medicinal cannabis. Close to 30,000 citizens are license holders and we are slated to become a major medical cannabis exporter.<br /><br />But back to C. She has been seizing several times a day without running a fever. That's why I intend to introduce daily THC, though the Hubby wants me to run it past C.'s neurologist first.<br /><br />C. enjoyed two hydro sessions this week, one with me as therapist, the second in the heated therapy pool with a professional hydro-therapist.<br /><br />Upon her return from that session she began to vocalize - a lot - until late that night. It resembled laughter. But the Hubby and I were creeped out by it. I was convinced she was just getting creative with her seizures. Her caregiver, E., insisted it was a positive step.<br /><br />Here's a brief video of the sound so you can judge for yourselves.<br /><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwLApdsCUMSbT_YnXEW_cxfagopRMNZW_tyCUaGRUsMyVlN0Aq4ASI2oqW4HaV_5qq1e9GLvgY07vd5IaYyfQ' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /></div><br />Whatever it was, we've only heard it once more, two days later.<br /><br />And as the summer draws to an end, here's a suggestion for those still enjoying hot weather: a disability-friendly beach equipped with special chairs that maneuver easily on sand and water. You just fly to Italy and <b><i><a href="https://en.wiktionary.org/wiki/ecco_l%C3%A0">ecco là</a></i></b>: real "access to the sea".<br /><br />A snap from the beach as captured in the NYT article:<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://2.bp.blogspot.com/-1EvR7ZoTvI0/WbQqJzCX3LI/AAAAAAAABu4/rlexVXuBUD8S5WgFIBytOusJnoWI7kX1wCLcBGAs/s1600/2017_09_09%2BItalian%2Bbeach%2Bfor%2Bspecial%2Bneeds%2Bpeople.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="383" data-original-width="538" height="283" src="https://2.bp.blogspot.com/-1EvR7ZoTvI0/WbQqJzCX3LI/AAAAAAAABu4/rlexVXuBUD8S5WgFIBytOusJnoWI7kX1wCLcBGAs/s400/2017_09_09%2BItalian%2Bbeach%2Bfor%2Bspecial%2Bneeds%2Bpeople.jpg" width="400" /></a></div><br /><a href="https://www.nytimes.com/2017/09/03/world/europe/disabilities-italy-beaches.html">Here's a description of the <b>beach</b></a>.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com4tag:blogger.com,1999:blog-5505187301023634468.post-14900976895478468662017-08-20T08:58:00.004+01:002017-08-20T08:58:45.872+01:00Water and oil<div class="separator" style="clear: both; text-align: center;"><a href="https://2.bp.blogspot.com/-S-tXETRf9Cs/WZkfuN7K0WI/AAAAAAAABuQ/xPfBNH30tB4_rDRSwV-8tUKwvsqJBZjRQCLcBGAs/s1600/2017_08_20%2B155406.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="575" data-original-width="800" height="287" src="https://2.bp.blogspot.com/-S-tXETRf9Cs/WZkfuN7K0WI/AAAAAAAABuQ/xPfBNH30tB4_rDRSwV-8tUKwvsqJBZjRQCLcBGAs/s400/2017_08_20%2B155406.png" width="400" /></a></div>I'm pleased to report that C.'s second Mommy-hydro stint far <a href="https://thesoundofthesilent.blogspot.ca/2017/08/a-manicure-and-mommy-hydro.html">surpassed her first</a>. She hardly crossed her legs at all which enabled her to center her body and float independently most of the session.<br /><br />Looking forward to this week's session.<br /><br />We are still pursuing our quest for eleven (instead of ten) bottles of Cannabis CBD along with one bottle of THC per month. <br /><br />In response to our request,the government bureaucrats who supervise the issue of medical cannabis have determined that a daily log of every CBD dose administered to C. over the last year is what's missing in their lives.<br /><br />The recommendations of C.'s neurologist, along with all the requisite paperwork already submitted, just didn't cut it. So we've dutifully supplied them with our log.<br /><br />A hospital-based neurologist to whom we brought C. years ago now apparently occupies a position of influence over the government's medical cannabis office. Our current neurologist has solicited his intervention.<br /><br />All we remember about the few visits we made to him with C. years ago is that he routinely asked us "So, what do you think?" and "What would you like to try now?" We never received a suggestion from him. For obvious reasons, we didn't stick with him for long.<br /><br />Let's hope he'll be quick and obliging now.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-73358789009767773072017-08-14T17:20:00.003+01:002017-08-14T17:22:49.406+01:00A manicure and Mommy hydroIt was a week of firsts for C.<br /><br />The <b>first </b>was her first hydrotherapy session in a non-therapy pool with only slightly heated water.<br /><br />The <b>second </b>was her first hydrotherapy session with an amateur therapist - yours truly.<br /><br />And the <b>third </b>was her first manicure courtesy of E., her caregiver. I don't know how I let her circulate all these years with un-done nails. She always has two sparkly hairpins and earrings but somehow the nail polish was overlooked. <br /><br />The hydrotherapy went surprisingly well.<br /><br />Although her floating was not as impressive as it has been in the past, I had braced myself for much worse. What C. did was cross her legs tightly - which I've never seen her do before. This caused her body to tilt sideways.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-4UTJFK502vA/WZHNvL3TV_I/AAAAAAAABt4/K2QtASP7uJkAtfk2mswZ4cSt5DY2hDGqgCLcBGAs/s1600/2017_08_14%2BLegs%2Bcrossed%2Bin%2Bpool%2B20170808_174842.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="517" data-original-width="500" height="320" src="https://1.bp.blogspot.com/-4UTJFK502vA/WZHNvL3TV_I/AAAAAAAABt4/K2QtASP7uJkAtfk2mswZ4cSt5DY2hDGqgCLcBGAs/s320/2017_08_14%2BLegs%2Bcrossed%2Bin%2Bpool%2B20170808_174842.png" width="309" /></a></div><br />I was unable to straighten them out despite concerted efforts. But now and then she uncrossed them herself and was then able to float easily without any support.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://2.bp.blogspot.com/-89O73PbHJig/WZHLaC9xsWI/AAAAAAAABtk/zAlJmur69qk6SrF4kXMWPy_KN3tQ-sYbgCLcBGAs/s1600/2017_08_14%2BFloating%2B155425.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="330" data-original-width="500" height="211" src="https://2.bp.blogspot.com/-89O73PbHJig/WZHLaC9xsWI/AAAAAAAABtk/zAlJmur69qk6SrF4kXMWPy_KN3tQ-sYbgCLcBGAs/s320/2017_08_14%2BFloating%2B155425.png" width="320" /></a></div><br />My guess is the temperature of the water caused the leg-crossing. Hopefully next time she'll be somewhat accustomed to the water and we'll have less of it.<br /><br />And here she is showing off her manicure.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Ojbjn-ZoP8Q/WZHMxW5itLI/AAAAAAAABtw/JTZJd39VfdcrNUKhyU6u4qX_AZ2BPmg9QCLcBGAs/s1600/2017_08_14%2BC%2Bwith%2Bdoll%2B-%2Bresized.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1076" data-original-width="792" height="320" src="https://1.bp.blogspot.com/-Ojbjn-ZoP8Q/WZHMxW5itLI/AAAAAAAABtw/JTZJd39VfdcrNUKhyU6u4qX_AZ2BPmg9QCLcBGAs/s320/2017_08_14%2BC%2Bwith%2Bdoll%2B-%2Bresized.png" width="235" /></a></div>The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com1tag:blogger.com,1999:blog-5505187301023634468.post-3893363092329079262017-08-03T18:57:00.003+01:002017-08-03T18:58:26.599+01:00Some inspiration from IndiaI had planned on personally giving C. this week a hydrotherapy session at the pool I swim in every day. I've watched years of her therapies and figured that by now I could tackle it myself. For years I've dreamed of doing so when the therapy pool at her school was closed for vacation. But good intentions were as far as I got.<br /><br />One reason was the challenge of getting her there and the other was my reservations about using a barely heated pool vs. the well heated therapy pool.<br /><br />Now, with her caregiver here to help me. it seemed feasible. The therapy pool will be closed for the next three weeks and I really am curious about how C. would react to the water. If she'd respond well, it would mean a huge savings of money.<br /><br />So I was suitably psyched up and set aside Thursday for our session. Then one of her nearly-healed pressure-sores re-erupted with redness all around the center. The wound clinic team reopened it, prescribed a fresh course of oral antibiotic and forbade swimming for at least a week. <br /><br />This is exactly one year after the blasted sore first erupted! That's got to be a world record for persistent pressure sores.<br /><br />The other "good" news is that the government's department of health has responded to our request for a raised dosage of CBD and one bottle per month of THC.<br /><br />It was "Nothing doing!"<br /><br />I'm flabbergasted. This is supposed to be one of the most progressive countries in the world with regard to medicinal cannabis and a leader in research into its benefits. What gives? <br /><br />We'll see what the neurologist has to say about this verdict. I dread having to cope with C.'s seizures without any THC.<br /><br />But I won't end on that negative note.<br /><br />I have a soft spot for success stories starring people with disabilities. Remember <a href="http://www.independent.co.uk/news/world/americas/argentina-noelia-garella-teacher-down-syndrome-a7377211.html">that remarkable <b>Argentinian kindergarten teacher</b></a>?<br /><br />This story hails from India and is as much about a plucky young woman with Downs as it is about her devoted parents who gave her a restaurant of her own to run. All three of them have a message for other parents of children with disabilities and for the children themselves.<br /><br />The story is all the more remarkable against the backdrop of the general plight of Indians with disabilities and specifically with Downs Syndrome.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://3.bp.blogspot.com/-1F0jEMaecbY/WYNj0EjNIlI/AAAAAAAABtI/NFqDfc22hqYsvVPX_RH1ZhuIfLY6E9eTQCLcBGAs/s1600/2017_08_03%2BAditi%2Bverma%2B-%2BVideo%2Bgrab%2Bfrom%2Bclip%2Babout%2Bher%2Brestaurant.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://3.bp.blogspot.com/-1F0jEMaecbY/WYNj0EjNIlI/AAAAAAAABtI/NFqDfc22hqYsvVPX_RH1ZhuIfLY6E9eTQCLcBGAs/s400/2017_08_03%2BAditi%2Bverma%2B-%2BVideo%2Bgrab%2Bfrom%2Bclip%2Babout%2Bher%2Brestaurant.png" width="400" /></a></div>The video is at <a href="https://www.facebook.com/thebetterindia/videos/1613392548695052/">https://www.facebook.com/thebetterindia/videos/1613392548695052/</a><br /><br /><a href="http://web.worldbank.org/archive/website01291/WEB/0__CO-43.HTM">From a <b>World Bank</b> report</a>:<br /><blockquote class="tr_bq">India has some 40 to 80 million persons with disability. But low literacy, few jobs and widespread social stigma are making disabled people among the most excluded in India. Children with disabilities are less likely to be in school, disabled adults are more likely to be unemployed, and families with a disabled member are often worse off than average. </blockquote>And the plight of those specifically with Down Syndrome:<br /><blockquote class="tr_bq">Downs Syndrome affects 23,000-29,000 children born in India every year. Though the numbers are alarming but there is <a href="http://pharmeasy.in/blog/eating-disorders-eating-away-india/">very little open dialogue on this topic in India</a>. Though it is not fatal, not in the developed countries but in India it continues to be fatal. This is mostly because of the low awareness levels and outdated medical facilities.</blockquote>India has the highest number of people suffering from Down Syndrome in the world. The numbers are alarming but what is more frightening is the fact that this condition is fatal in India due to negligence, lack of awareness, and obsolete medical and technological facilities... Out of the 23,000 to 29,000 kids born with Down Syndrome in India every year, the survival rate is only 44% for those who have congenital heart disease [<b><a href="http://pharmeasy.in/blog/down-syndrome-bringing-the-nation-down/">Source</a></b>]The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-18930014828881776202017-07-23T19:22:00.000+01:002017-07-23T19:22:17.433+01:00Late but elatedC. had hydrotherapy last week. As you all know, it's the one bright spot in her otherwise bland, often bleak, existence.<br /><br />We had high hopes for a productive session since she hadn't been seizing that day. But when I arrived, fifteen minutes after it had begun, I found her in the tight grip of a novice: see photo below. <br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://2.bp.blogspot.com/-NpvkQCk-fpI/WXTo2M4iaGI/AAAAAAAABsg/lWbcQRvsGXQ1fPFWBn7W9j4Ell3snmZwACLcBGAs/s1600/2017_07_23%2BC%2Bin%2Bhydro%2Bpool%2Bwith%2Bnovice.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="741" data-original-width="600" height="320" src="https://2.bp.blogspot.com/-NpvkQCk-fpI/WXTo2M4iaGI/AAAAAAAABsg/lWbcQRvsGXQ1fPFWBn7W9j4Ell3snmZwACLcBGAs/s320/2017_07_23%2BC%2Bin%2Bhydro%2Bpool%2Bwith%2Bnovice.png" width="259" /></a></div><br />The novice told me that she was filling in for C.'s regular therapist who was a no-show that day. She was clueless as to how to work with C., and just clutched her to smithereens. <br /><br />I immediately intervened, urging her to let go and allow C. to float independently. But she just couldn't do that.<br /><br />I noticed another therapist in the pool who used to work with C. while she was still in school. <br /><br />"How about asking her for guidance?" I suggested to the novice.<br /><br />"How about I just ask her to swap students with me?" she replied. <br /><br />I couldn't have been more thrilled. Only fifteen minutes of therapy remained but they left me, the therapist and C.'s caregiver, all elated. Not only did C. float on her own she moved her legs to keep them afloat too - something she has never done before.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-tjhNvxeLTQI/WXTpA75LwjI/AAAAAAAABsk/0RAc5ZsmIss3j_CVahzg1HYka3sH8r0rwCLcBGAs/s1600/2017_07_23%2BC%2Bin%2Bhydro%2Bpool%2B3.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="682" data-original-width="895" height="243" src="https://1.bp.blogspot.com/-tjhNvxeLTQI/WXTpA75LwjI/AAAAAAAABsk/0RAc5ZsmIss3j_CVahzg1HYka3sH8r0rwCLcBGAs/s320/2017_07_23%2BC%2Bin%2Bhydro%2Bpool%2B3.png" width="320" /></a></div><br />There is simply no therapy like hydro!<br /><br />And the next day was C.'s chance to caress her adorable nephew: <br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://3.bp.blogspot.com/-BGlULAFkcQc/WXTpKF0C0ZI/AAAAAAAABso/gjdVpkGGYZ0y6913OA5BW6ql7SG106pRwCLcBGAs/s1600/2017_07_23%2BC%2Bwith%2Bnephew.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="971" data-original-width="747" height="320" src="https://3.bp.blogspot.com/-BGlULAFkcQc/WXTpKF0C0ZI/AAAAAAAABso/gjdVpkGGYZ0y6913OA5BW6ql7SG106pRwCLcBGAs/s320/2017_07_23%2BC%2Bwith%2Bnephew.png" width="246" /></a></div><br />Now, she's recovering from a stomach virus that I brought home. Could've done without this but thankfully it's passing quickly.<br /><br />For those who are wondering why I arrived fifteen minutes after C.'s caregiver had brought her to hydro, promptness isn't my forte and never was.<br /><br />I read a terrific short story yesterday that expressed my time troubles perfectly. The story's narrator says:<br /><blockquote class="tr_bq">"I'm 9, a solid sensitive, fearful boy. There's a big judo competition today. I never get anywhere on time. I don't know time. I have no understanding of time. Time is beyond me." </blockquote>The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-78743273431086790692017-07-14T15:54:00.001+01:002017-07-14T15:54:34.257+01:00Cheers for JK Rowling - and a nod to KeppraWell, it's been a while and I really can't explain why.<br /><br />I've been snowed under by ordinary family stuff including caring for a few precious grandchildren for several days. But why I haven't found time to update is a puzzle.<br /><br />C. decided that she'd better rein in her seizures when her nieces and nephew arrived. More realistically, the only change in her diet and meds that I can credit with the turnaround - and that's very reluctantly - is raising her <a href="http://www.webmd.com/drugs/2/drug-18053/keppra-oral/details"><b>Keppra</b> </a>dose.<br /><br />Two weeks ago when she was wracked with seizures I asked the neurologist whether she'd recommend raising Keppra. She liked the idea. So we're now at 2,500 mg/day, divided into two doses<br /><br />I would have preferred an improvement due to the raised cannabis. But unfortunately that hasn't been the case for several months.<br /><br />Not that we're about to drop it, of course. I still hold out hope. Perhaps once we get the license for a monthly bottle of THC and can experiment with a daily dose of it we'll see positive changes.<br /><br />I listened to <b><a href="https://en.wikipedia.org/wiki/Christiane_Amanpour">Christiane Amanpour</a></b>'s interview with J.K. Rowling [<a href="https://www.youtube.com/watch?v=iONIaaLLnC0"><b>link</b></a> and below] on CNN - twice through! It was music to my ears.<br /><div style="text-align: center;"><br /></div><div style="text-align: center;"><iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/iONIaaLLnC0" width="560"></iframe><br /></div><br />In these parts, we are bombarded with "news" reports lauding the largest chain of institutions for children and young adults with disabilities. Local media outlets cover everything from groundbreaking ceremonies for expansion buildings to visits by local politicians, celebrities and wealthy donors.<br /><br />Never a negative word is uttered about the popularity of warehousing these most vulnerable children. Certainly, the concept of de-institutionalization of people with disabilities - Rowling's goal - is never, ever raised.<br /><br />I urge you to watch this Rowling interview - once will suffice.<br /><br />She's intelligent, articulate and passionate about her organization, <b><a href="https://wearelumos.org/about">Lumos</a></b>. "<i>As much as possible, Lumos wants to help children return home to the arms of those they love</i>", she told Amanpour.<br /><br />Amen.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com1tag:blogger.com,1999:blog-5505187301023634468.post-5131374833835209642017-06-30T15:25:00.000+01:002017-07-02T09:59:05.969+01:00Summertime and the livin' is none too easyC. is lying beside me and I'm afraid to move or touch her lest I trigger another seizure.<br /><br />She has been having lot of them today. Not enough to qualify as <a href="http://www.epilepsy.com/learn/impact/seizure-emergencies/status-epilepticus"><i>status epilepticus</i></a>, but nonetheless, not a pretty picture.<br /><br />Yesterday, they were frequent but mild. Today, they're the full blown sort; the ones that engage every cell in her body, contort her face, cause moans and cries and devastate me.<br /><br />I write this with the expectation and dread of the next one.<br /><br />Unfortunately, she has no fever - and I mean not a trace of it. The thermometer read 37.3 degrees Celsius rectally (say 99.1 in Fahrenheit terms) which can't be considered fever by any stretch of the imagination. So I haven't given her any Advil. When she gets her neurological fevers, Advil banishes the seizures.<br /><br />Then there's the <a href="https://www.livescience.com/24553-what-is-thc.html"><b>THC</b> oil</a> which usually zaps strings of seizures. When I gave it to her this morning, it had no effect. Since that was ten hours ago, I could try another dose now. But I'm reluctant to because we're down to our last few drops of it.<br /><br />Our neurologist's request from the medical cannabis authority for a new license which adds a bottle of THC to the ten bottles of CBD we receive has gone unanswered. <br /><br />Our own numerous calls, emails and faxes to the frigging government office have also been in vain. The only response we have gotten was a couple of weeks ago when we received a new, temporary license. It permits the same number of bottles of CBD we've been receiving and makes no mention of THC!&nbsp; <br /><div style="text-align: center;">________</div><br />I wrote that last night. Today she's only marginally better; slightly fewer seizures, but still looking like a rag doll most of the time.<br /><br />We've emailed her neurologist for her advice and just to "kvetch" a bit. I asked her whether she thought we could raise the <b><a href="http://www.epilepsy.com/connect/forums/medication-issues/does-anyone-being-keppra">Keppra</a></b> dose although that really isn't a route I relish taking. (C. is now at 1,000 mg of it twice/day.)<br /><br />Here's a photo of C. (below) taken on Tuesday before this downturn - at her weekly hydrotherapy session.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://2.bp.blogspot.com/-fZ194nt13J0/WVZYUzHv2cI/AAAAAAAABrw/eEAtnPThGMcdTEqMi6_0mw-7X8gWLuTmACLcBGAs/s1600/2017_06_27%2BC%2Bin%2Bthe%2Bhydro%2Bpool%2B2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="397" data-original-width="646" height="196" src="https://2.bp.blogspot.com/-fZ194nt13J0/WVZYUzHv2cI/AAAAAAAABrw/eEAtnPThGMcdTEqMi6_0mw-7X8gWLuTmACLcBGAs/s320/2017_06_27%2BC%2Bin%2Bthe%2Bhydro%2Bpool%2B2.png" width="320" /></a></div><br />And here (below) she is last week with her little nephew. The interest they show in her as babies fades fast when they realize she can't interact. By around the age of one, they ignore her.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://3.bp.blogspot.com/-YKDSij22zvk/WVZeS6P-X7I/AAAAAAAABsI/crQ2TfMzafgMjCcDSoGnnpUU7DN3JSE8wCLcBGAs/s1600/2017_06_30%2BC%2Bwith%2Bnephew%2BSM%2B20170621_131153.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="484" data-original-width="600" height="257" src="https://3.bp.blogspot.com/-YKDSij22zvk/WVZeS6P-X7I/AAAAAAAABsI/crQ2TfMzafgMjCcDSoGnnpUU7DN3JSE8wCLcBGAs/s320/2017_06_30%2BC%2Bwith%2Bnephew%2BSM%2B20170621_131153.png" width="320" /></a></div>The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com2tag:blogger.com,1999:blog-5505187301023634468.post-38663019751917575152017-06-04T08:45:00.002+01:002017-06-04T08:45:33.255+01:00Those pesky pressure sores<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-UxdvOpwTTj4/WTO6c906nvI/AAAAAAAABrY/r5zREBeQmccRoycXpmCSBQkLfbcmrq8cQCLcB/s1600/2017_06_04%2BInjecting%2Biodine.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="1280" height="180" src="https://3.bp.blogspot.com/-UxdvOpwTTj4/WTO6c906nvI/AAAAAAAABrY/r5zREBeQmccRoycXpmCSBQkLfbcmrq8cQCLcB/s320/2017_06_04%2BInjecting%2Biodine.png" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Me injecting iodine into the pressure sore<br />on C's foot</td><td class="tr-caption" style="text-align: center;"><br /></td></tr></tbody></table><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">We'd hardly resumed C.'s hydrotherapy when a 10 month old pressure sore - presumed nearly healed - sprang back to life. It was her devoted caregiver, E., who decided it warranted another visit to the wounds clinic.</div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">I, on the other hand, was certain that my squeezing the thing had returned it to the healing route.</div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">Turns out I couldn't have been more wrong. The wound expert (she's the clinic nurse and the doctors take her advice!) determined that C. needs oral antibiotic and a switch to this novel bandaging protocol: You syringe some iodine into the wound before applying a patch of iodine-soaked mesh and finally, a gauze bandage. (I snapped myself doing it - the pic above.)</div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">And this relentless wound has also robbed C. of her hydrotherapy session this week. Apparently it would be bad for the wound and bad for the other swimmers.</div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">Now please wish me luck: for the coming week, C. and I will be home on our own - with E. during the day - while the Hubby is overseas. I'm already counting the hours till his return.</div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">Here's a drawing based on a photo of a couple of weeks ago when C.'s nieces and nephews were all at our place. That's another one of her weird bandages on her arm.</div><div style="-webkit-text-stroke-width: 0px; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; color: black; font-family: &quot;Times New Roman&quot;; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: center; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><a href="https://3.bp.blogspot.com/-6uCmng1Qa4o/WTO5Q66Z0UI/AAAAAAAEqZ8/S7ecA72WPsYFgv_qst9LUVPosm-4qppAgCLcB/s1600/2017_06_04%2BSM%2BPortrait%2Bwith%2Bbandage.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="881" data-original-width="600" height="400" src="https://3.bp.blogspot.com/-6uCmng1Qa4o/WTO5Q66Z0UI/AAAAAAAEqZ8/S7ecA72WPsYFgv_qst9LUVPosm-4qppAgCLcB/s400/2017_06_04%2BSM%2BPortrait%2Bwith%2Bbandage.png" style="cursor: move;" width="271" /></a></div>The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com2tag:blogger.com,1999:blog-5505187301023634468.post-32251806253954232862017-05-18T15:45:00.002+01:002017-06-07T21:09:46.024+01:00Yay - we're back to hydrotherapy!<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-1ZPvunkxK54/WR2zW46mQfI/AAAAAAAABq4/nt5JkSBKovoXuEMTa9q3Kp4gfeoB0DCmwCLcB/s1600/2017_05_16%2BC%2Bgets%2Bhydro.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="217" src="https://1.bp.blogspot.com/-1ZPvunkxK54/WR2zW46mQfI/AAAAAAAABq4/nt5JkSBKovoXuEMTa9q3Kp4gfeoB0DCmwCLcB/s400/2017_05_16%2BC%2Bgets%2Bhydro.png" width="400" /></a></div><br />C. had her first, post-school-hydrotherapy session yesterday.<br /><br />She seemed relaxed and at times floated nearly independently - that is, after I donned my "meddling mom" hat and urged the therapist to reduce her support.<br /><br />But those seizures persisted during the session. A couple of whoppers and many of the minis. <br /><br />And while I did meddle, I was mindless of the proper gear for C. For instance, I entirely forgot about bringing along <i><a href="https://www.littleswimmers.co.uk/products/swim-pants/">Huggies Little Swimmers</a></i>. So C. had to contend with a weighty water-logged diaper. <br /><br />The photo shows her contending.<br /><br />Meanwhile we're giving <b><a href="http://www.livescience.com/24553-what-is-thc.html">THC</a></b> when the going gets tough, and it has been effective the last couple of times. (Despite the bottle's expiry date of 03/17 - it's all we've got while awaiting our new, amended medical cannabis license that will enable us to purchase a fresh bottle.)The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0tag:blogger.com,1999:blog-5505187301023634468.post-45542621213044183212017-05-16T13:14:00.002+01:002017-05-16T13:14:40.303+01:00Piling on the therapies and the Keppra<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-E52eaHRjaEA/WRrrW6NTIgI/AAAAAAAABqc/cZDWC9NF5VQamG4hR8Qo1UcKrzH_38wTACLcB/s1600/2017_05_16%2BTherapist.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-E52eaHRjaEA/WRrrW6NTIgI/AAAAAAAABqc/cZDWC9NF5VQamG4hR8Qo1UcKrzH_38wTACLcB/s320/2017_05_16%2BTherapist.png" width="254" /></a></div>It's been a rough three days for C. with seizures up the wazoo, some accompanied by fever, others without. Up to eight major ones a day and many small ones involving only her eyes and mouth (too many to count).<br /><br /><b><a href="http://hightimes.com/medicinal/science/the-simple-answer-what-are-thc-cbd/">THC</a></b> didn't work its magic. Nor did <b><a href="https://www.drugs.com/advil.html">Advil</a></b> when there was a bit of fever so I finally raised the <b><a href="https://en.wikipedia.org/wiki/Levetiracetam">Keppra</a></b> from 750mg twice a day to 200mg twice a day. The neurologist had advised doing that a few months ago but I put it off, hoping that raising her <a href="http://herb.co/2016/07/26/everything-you-need-to-know-about-cbd/"><b>CBD</b></a> dose would suffice.<br /><br />The physiotherapist from our <a href="https://www.healthcare.gov/glossary/health-maintenance-organization-HMO/">HMO</a> came twice last week and is due for another visit today. He does the same sort of limb-stretching that the other one, hired privately, did only minus the white coat and the almond oil massage, and he does it for 15 minutes instead of one hour. Well, these sessions are totally free so some corner-cutting is to be expected.<br /><br />C.'s spasticity has become rather serious so we'll also persevere with these stretches on our own throughout the day. So far, no results, though.<br /><br />At this point, we're postponing starting a new drug recommended by the gastroenterologist to reduce spasticity. You know that cardinal rule: never introduce multiple new med variables simultaneously.<br /><br />And, after a nine month hiatus, C. is having her first hydrotherapy session today. <br /><br />I'm hoping she'll function as well, or nearly as well as she used to: floating on her back, kicking her legs slightly, scrupulously keeping her face out of the water. But I have a hunch that won't be the case. Stay tuned for her hydro "report card".<br /><br />The snapshot above, slightly obscured to protect his privacy, is of our HMO physiotherapist at work with C.The Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.com0